2 months old already, eh?
To say the least, it's been a crazy 2 months around here...
As some of you already know,
shortly after Calla was born, a rash appeared on her right leg.
To say the least, it's been a crazy 2 months around here...
As some of you already know,
shortly after Calla was born, a rash appeared on her right leg.
A rash that hasn't gone away.
A rash that stumped our pediatrician.
A rash that continues to blister over again and again.
A rash that is an indicator of an extremely rare genetic condition.
A genetic condition called Incontinentia Pigmenti.
A rash that stumped our pediatrician.
A rash that continues to blister over again and again.
A rash that is an indicator of an extremely rare genetic condition.
A genetic condition called Incontinentia Pigmenti.
Shortly after Calla's 1 week appointment,
I took her back into the pediatrician because the rash kept blistering over.
Our ped didn't know what it was,
so she referred us out to a pediatric dermatologist.
so she referred us out to a pediatric dermatologist.
We visited the dermatologist that week.
She did a biopsy on Calla's leg and said she would see us next week when they had the results back.
She did a biopsy on Calla's leg and said she would see us next week when they had the results back.
When we returned, the doctor had some unfortunate news for us...
Calla has Incontinentia Pigmenti (IP).
Our doctor was very straightforward as she spoke,
and the complications she laid out before us were far from good.
This condition can affect Calla's
skin,
hair,
nails,
eyes,
teeth,
and central nervous system.
skin,
hair,
nails,
eyes,
teeth,
and central nervous system.
So, so scary.
Because the condition is so rare,
and because each case is unique to the individual,
we don't know exactly how severely Calla will be affected.
and because each case is unique to the individual,
we don't know exactly how severely Calla will be affected.
Thankfully, some of the more serious complications such as
mental retardation,
seizures,
and blindness
currently are not present...
mental retardation,
seizures,
and blindness
currently are not present...
but we have our work laid out ahead of us.
We have seen many doctors the past few weeks.
The first and most important visit was with a pediatric ophthalmologist.
One of the major concerns with children with IP is the risk of retinal detachment,
which can cause blindness.
which can cause blindness.
We saw the ophthalmologist shortly after Calla was diagnosed.
He said her eyes are looking perfect so far,
but we need to continue to see him quite frequently during the first few years.
He said her eyes are looking perfect so far,
but we need to continue to see him quite frequently during the first few years.
We see him again at the end of the month.
Next, Calla had an echocardiogram done.
The results came back that she does have a small hole in her heart,
but it is something that they can monitor with a stethoscope.
but it is something that they can monitor with a stethoscope.
And although it's not a completely detrimental finding,
it still is yet another thing to keep track of.
it still is yet another thing to keep track of.
After the echo, we visited with a genetic counselor.
We were presented with a lot of information about IP,
most of which we already knew due to our own extensive research.
Once insurance information goes through,
we are getting Calla genetically tested,
and then I will get tested, too.
we are getting Calla genetically tested,
and then I will get tested, too.
IP typically is a genetic condition that is passed down on the mother's side.
Although I don't show any symptoms of IP,
it is possible that I passed in on to our baby girl.
it is possible that I passed in on to our baby girl.
But, it could possibly be a mutation that occurred only in Calla's DNA.
We are hoping to find out more through the genetic testing.
Earlier this week Calla had an EEG done to check for seizures.
The results came back normal,
but we are meeting with a neurologist on Monday to talk further.
but we are meeting with a neurologist on Monday to talk further.
Sooooo
yeah...
The past 2 months have been some stressful times.
yeah...
The past 2 months have been some stressful times.
Chris is the cool, calm, and collected one through all of this.
I, on the other hand, worry and over-analyze every. single. thing.
And although we really do believe she is going to be ok,
I still worry about her every. single. day.
Right now we are just taking one day at a time...
staying on top of the important doctor's appointments...
and hoping for the best!
Despite all of life's craziness right now,
Calla really is such a joy to have in our lives.
Calla really is such a joy to have in our lives.
She is smiling and sometimes even giggling at us.
She is such a snuggle bug.
She loves watching her big sister and playing on her play mat.
She isn't very consistent with her nighttime sleep lately, but that's ok.
A couple of nights ago she slept from 11pm to almost 6am!
But she followed that up with a night nursing every 2 hours....
Fortunately for me, both of the girls nap at the same time every day.
Woohoo!
2 months old and SO happy!
I just love this little person so, so much!
All 12 pounds, 7 ounces, and 23 inches of her.
I just love this little person so, so much!
All 12 pounds, 7 ounces, and 23 inches of her.
:)
For more information about IP,
check out the Incontentia Pigmenti International Foundation website here.
It is quite comprehensive and provides some good info that I'm sure I forgot to mention in all of my rambling...
2 comments:
Thinking of you guys! It certainly sounds like you have a great care team in place. You'll be in my thoughts often, cyber-friend! Love up that gorgeous babydoll!
Saw your post on the IP Facebook and your daughters story sounds a lot like ours-your words very similar to mine even in my blog. You can read it at www.lnicolewrites.blogspot.com and read Update on Lyla. Praying for your little one and glad to hear everything with her eyes and all is great too!
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